CDC Symptom Diary Card

Monday, April 01, 2013

Gynecology Oncologist the Only Surgeon For Us

The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt


Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.

I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.

I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....

My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.

Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.

My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.

A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.

Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.

He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.

Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.

My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.

So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.

Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY

My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.

During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun

The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.

I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.

I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.

Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.

Thank you God for my loving family and friends. Thank you Arnie.

It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.

If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.

So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.

My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.

One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.

I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.

Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.

I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.

A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.

Happy Easter and much love to my family and friends.

I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.

Love,
Denise

5 comments:

  1. Denise, I'm so glad you had a lovely time with family. I bet you are a favorite aunt!

    I'm amazed you are able to continue so long on doxil.

    I, too, was fortunate to have a gyn/onc do my surgery. I had no clue I needed him, but my gall bladder surgeon (who found the cancer) referred me to him and I'm convinced his excellent surgery is part of why I'm still here today four years later.

    Bless you! I think of you often!

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  2. Inspirational, to say the least. There are not many who can muster that kind of tenacity to stand up for  a draining struggle, every single day. Think a lot of us can take a leaf out of your book to put life in perspective.

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  3. Thank you for giving information on cancer treatment.It is really good and helpful for the people.Keep giving such a valuable information.
    Regards:oncology hospital india

    ReplyDelete
  4. When it comes time to select a new gynecologist, due to a move or a change in insurance, a woman needs to take time to choose one that will work well for her. This health practitioner will be a woman's most intimate health care provider.



    Gynecologist Boca Raton

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  5. http://www.webmd.com/ovarian-cancer/guide/ovarian-cancer-topic-overview

    Here is a fine example of missing information. I guess my next step is to let them know to clarify that the surgeon needs to be a gynecological oncologist. Standards are lacking I guess.

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Thank you for giving to me your precious time. I look forward to what you have to say. Peace and Blessings, Always.